Patient Worthy signed up to cover several sessions at the Huntington's Disease Society of America's (HDSA) 36th Annual Convention, which was held virtually this year. This event features informative presentations…
When a patient is told that they have a life-threatening rare disease and then told that there is no cure, every effort is made to attend to their physical needs.…
by Lauren Taylor from In The Cloud Copy COVID-19 has now been wreaking havoc on our country and world for months, with little end in sight. It came very quickly…
by Lauren Taylor from In The Cloud Copy As the world continues to watch the effects of COVID-19 sweep around the world, many worry about getting infected. A study from…
This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter here. To state the blatantly…
As we live through the Great Quarantine of 2020, online therapy may be piquing your interest. The world is in a time of uncertainty, which is psychologically stressful (and isolating),…
When you have a rare disease, you know that the way it effects your life goes far beyond the symptoms listed on WebMd. It riddles through plans for weekend, your…
The Mental Health Rare Genetic Disease Network (MHRGDN) is a newly launched system, developed by the National Institute of Mental Health. The MHRGDN spans 15 research sites across the country…
Say It Out Loud: There Is No Shame in Mental Illness. These are important words that every child, teen, and adult should hear! May is Mental Health Awareness Month, with…
When you live with a life-changing disease like myasthenia gravis, or MG, it’s normal to feel down or have difficulty adjusting to the loss of control. For many, it’s easy…
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